This trial is active, not recruiting.

Summary

This is a prospective study through the NF clinic at Massachusetts General Hospital that
will examine the relationship between psychosocial factors, health literacy, and
satisfaction with the medical visit in adults with NF1, NF2, and Schwannomatosis. A total of
89 participants will be enrolled in the study.

Study Design

After enrollment, subjects will be given baseline measures to assess demographics, psychosocial factors, and health literacy. This assessment will occur online via Computerized Assessment Center. Participants will complete the PROMIS battery of measures assessing: depression, anxiety, anger, fatigue, pain behavior and interference, physical function, satisfaction with discretionary social activities, satisfaction with social roles, and health literacy. Participants will also complete the FFFHL scale.
Upon completion of the baseline assessments, the participant will meet with their doctor at the NF clinic for a routine appointment. Post-treatment assessments will be administered immediately after completion of the medical visit. This assessment will evaluate the participant's satisfaction with the appointment in the NF clinic using the MISS and CAHPS surveys. This will be done online via REDCap.

questionnaires

All subjects will complete baseline psychological assessments prior to their medical visit. Upon completion of their routine medical visit, subjects will complete a post-test assessment measuring their satisfaction with the visit.

Primary Outcomes

Measure

Patient Reported Outcomes Measurement Information System (PROMIS)

time frame:
Baseline (pre-medical visit)

Functional, Communicative and Critical Health Literacy (FFFHL) scale

time frame:
Baseline (pre-medical visit)

Medical Interview Satisfaction Scale (MISS)

time frame:
Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours.

time frame:
Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours.

Eligibility Criteria

Male or female participants at least 18 years old.

Inclusion Criteria:
1. Age 18 or older
2. Can read and speak English at or above the 6th grade level
3. Diagnosis of neurofibromatosis type 1, neurofibromatosis type 2, or schwannomatosis
Exclusion Criteria:
1. Severe active or untreated major mental illness that would interfere with study
participation, to be determined at the discretion of the study investigator (e.g.
untreated psychosis or suicidality)
2. Unable or unwilling to participate
3. Unable or unwilling to complete psychological assessments online via the REDCap or
Assessment Center systems.

Additional Information

Official title

Relationship Between Psychosocial Factors, Health Literacy, Quality of Life and Satisfaction With Medical Visits in Adults With Neurofibromatosis 1, Neurofibromatosis 2, and Schwannomatosis